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Discussions

Polycythemia and hydrea

Ever since starting hydrea, I have had two episodes of horrible pain while I am sleeping. The day I felt terrible. My spouse says I wake up breathing fast and heart racing. She asks me how I am feeling bad but I can’t describe just terrible.

I wasn’t able to tolerate hydrea myself. Two attempts to use it and both times I became unable to exert myself, even small stairs left me breathless. Other non tolerance symptoms as well. Also, I too had heart racing and discomfort all around.

I am now on JAKAFI (Ruxolitnib). The JAKAFI is working well, but it too has side effects that are treatable. JAKAFI made my diastolic blood pressure rise, which is a potential side effect, and I am now taking 20 mg of Lisinopril daily and my blood pressure has returned to normal.